The following lists palliative care research primarily conducted by Australian research groups. The list is based on application of the CareSearch search filter for palliative care to identify articles held within the PubMed database and corresponding to the strongest evidence. Articles have been selected based on relevance and new articles are added on a weekly basis.
Whilst not an exhaustive list, the aim is to keep the community informed by providing a snapshot of recent research findings and planned studies in the Australian setting.
Bourke C, Chenoweth L, Georgousopoulou E, Williams A.
Aims: To develop and validate the End-of-Life Care Assessment Tool for Dementia (EoLC-ATD).
Design: A methodological study with multiple phases.
Methods: Five sub-studies comprising: a review of 90 validated dementia measures to compile an item bank of advanced dementia symptoms; focus groups with registered nurses on advanced dementia symptom identification and relevance of item bank inclusions; Delphi surveys with dementia experts seeking consensus on the EoLC-ATD constructs and items; pilot testing of the EoLC-ATD; and field testing of the EoLC-ATD in persons with dementia.
Results: The item-bank included 180 symptoms, most of which focus group nurses (n = 17) identified as occurring in advanced dementia. Delphi surveys with dementia experts (n = 31) achieved 70% consensus for 25 of 26 EoLC-ATD items. Pilot testing of the EoLC-ATD by two nurses in eight persons with dementia showed good agreement for six constructs (Cohen's Kappa 0.856-0.927) and 26 items (Cronbach's alpha 77.0). An 'other sympto' item was included following RN recommendation. The 27-item EoLC-ATD field tested by 17 nurses in persons with dementia (n = 113) accurately identified advanced dementia symptoms (Cronbach's alpha 77.0, p < 0.001). Mortality at 180 days after baseline EoLC-ATD was significant (p < 0.001, area under the ROC curve p = 0.769).
Conclusions: The EoLC-ATD accurately and reliably identified symptoms of advanced dementia.
Chiew F, Krupka Z.
Abstract: Palliative care volunteers play a crucial role in supporting people who are terminally ill. Previous studies have indicated that a personal experience of grief and bereavement is a motivating factor for wanting to be a palliative care volunteer. Using reflexive thematic analysis as a methodological approach, the aim of this qualitative study was to explore the lived experience of grief and bereavement in a group of 11 Australian volunteers in adult palliative care settings. Three themes were identified from the dataset: witnessing and finding community; approaching death and dying with curiosity and openness; living well through death awareness. Importantly, death awareness was felt by volunteers to be an essential part of sense making around their past grief and a source of guidance for appreciating life. The findings of this study contribute to a deeper understanding of volunteering motivations, end-of-life care, and the changing nature of grief as a lived experience.
Fisher L, Stirling M, Jones R, Pierce K, Lingam R, Marshall GM, et al.
Aim: Improving the wellbeing of children with chronic health conditions and their caregivers can be maximised through research that addresses the priorities of this population. This study aimed to investigate the research topics and areas of care deemed most important to caregivers of children living with chronic health conditions in Australia.
Methods: A list of 25 research topics were presented in two rounds of a classic Delphi consensus survey to caregivers of children with chronic health conditions. Caregivers ranked these topics according to their perceived importance. High ranking topics were taken forward into a value-weighting exercise which was presented to a national sample of caregivers. In this exercise caregivers were asked to allocate hypothetical research funding units (FU) across research topics as well to different areas of care (Prevention, Screening and Early Detection; Newly Diagnosed; Receiving treatment; Finished treatment; Relapsed, receiving Palliative care; Significant Others [e.g., family members, friends, caregivers]).
Results: Seventy five caregivers completed Delphi Survey 1, 45 completed Delphi Survey 2 and 252 completed the value-weighting exercise. In the value-weighting exercise, the research topic 'Improve Access to Healthcare' received the highest mean allocation of 23.42/100 FU (SD = 19.48), followed by 'Improving Day to Day Functioning' (mean allocation 17.37 FU [SD = 16.2]). The 'Prevention, Screening and Early Detection' area of care received the highest mean allocation of 27.47 FU (SD = 19.48).
Conclusions: This study highlights the research priorities of caregivers of children living with chronic health conditions. This information can be used to guide future research and funding decisions in paediatric chronic health conditions.
Lovell MR, Warner KN, Archer P, McCabe R, Siddall PJ.
Objectives: People living with cancer and other life limiting illnesses often experience spiritual and existential distress. This distress may be linked to trauma related to the disease, treatment or preexisting posttraumatic stress, which may be exacerbated. Interventions based on posttraumatic growth have proven to be successful in promoting psychological, spiritual and existential wellbeing in people suffering chronic pain and spinal cord injury. This project aimed to design and develop an intervention to promote psychological and spiritual well-being in people with a life-limiting illness receiving palliative care by drawing on the principles of posttraumatic growth.
Methods: Action research cycles, based on a participatory health perspective to include those living with life limiting illness and/or practitioners associated with their care in all stages of the study, were used to design and develop an intervention based on posttraumatic growth principles. People experienced in delivering palliative care services in hospital and/or community settings (N = 30) and those suffering life limiting illnesses and receiving palliative care (N = 9) participated in this study. Two pilot programs were run.
Results: Participatory action research, used iteratively in two pilot programs, was employed to design and develop a novel intervention based on posttraumatic growth suitable for use in the palliative care context.
Conclusions: This intervention developed using a posttraumatic growth framework has the capacity to improve the lives of people living with a life-limiting illness while receiving palliative care.
Senanayake P, Oldroyd J.
Background: The goal of pediatric palliative care is to improve the quality of life of children with life-limiting or life-threatening disease and their families through a holistic care approach. Although the current evidence suggests that the existing palliative care services are not meeting the needs of these families, especially the parents, these studies are heterogeneous with inconsistent results. The aim of this study was to systematically synthesize and critically evaluate the available evidence on unmet needs of parents in pediatric palliative care.
Methods: A qualitative systematic review was conducted, informed by the Preferred Reporting Items for Systematic reviews and Meta-Analyses 2020 statement. Five electronic databases: MEDLINE, Scopus, Web of Science, CINAHL, and PsychINFO were searched. Included studies were appraised using the Critical Appraisal Skills Programme (CASP) checklist and then analyzed using a framework analysis.
Results: Thirteen studies were included. Five major themes emerged: (1) pediatric palliative care services delivery and care coordination, (2) emotional, psychological, and spiritual support, (3) end-of-life care and bereavement support, (4) practical and daily living support, and (5) communication and information. Parents reported unmet needs in multiple dimensions and wished for more support in caring for their children.
Conclusions: Given that all of the unmet needs align with already established pediatric palliative care standards, this review highlights the need for revised health care policies and practices that will lead to better implementation of these standards in practice.
Last updated 30 April 2024